POS1124 LUPUS100.ORG A NEW TOOL FOR DOCTORS TO BUILD PATIENTS LUPUS KNOWLEDGE AND FIGHT POOR QUALITY WEB INFORMATION
Authors: A. Cornet, A. Sluijmers, F. Marchiori, C. Hjelmeset, I. D. Povilaite, E. Koskina, K. Blomkvist Sporre
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Access to quality disease information is one of the cornerstones of therapeutic education and critical to help the doctor-patient dialog and adherence to treatment. Lupus patients and doctors alike lack the time in consultation to address the many questions patients have. As a result, patients often rely on poor quality or unverified information from the web. For non-English speakers, the language barrier is adding yet another obstacle to quality therapeutic education. <h3>Objectives</h3> To provide access to doctor verified SLE quality information on-line, in the mother language of 95%+ of the European population so that doctors can refer patients to quality information sources. <h3>Methods</h3> With the endorsement of ERN ReCONNET reference network, Lupus Europe and doctors from ReCONNET's SLE Working group have developed a multilingual Euro-wide website answering the top 100 questions patients have about lupus. The starting point to build the content has been the French book "lupus en 100 questions" authored by lupus experts from the French FAI2R. Working extensively with patients from Lupus Europe PAN, the list of questions has been adjusted, answers to existing questions have been checked and validated or adjusted for up-to-dateness. New patient questions have been answered by lupus specialised doctors in collaboration with patients. The resulting documents have been translated in English and the translations validated by both patients and doctors. This core English version has then received feedback from ERN ReCONNET SLE WG doctors. Finally, the end result has been translated in more than 15 languages, verified by native lupus doctors and patients prior to being put on line. This exercise is continuing at the time of writing the abstract, with the goal of covering more than 20 languages and 99% of European population by end 2023. The web site is managed and controlled by Lupus Europe, the European Lupus patients organisation. Aside from this "one-shot" effort, a process has been designed to collect questions and comments from patients and doctors. Those will then feed the on-going maintenance of the information. New developments or new questions will be used to systematically review the content and update it using a Delphi process within the ERN ReCONNET SLE Working group. <h3>Results</h3> lupus100.org website provides free of charge quality information on lupus for patients, relatives, doctors or students. Its multilingual character allows all people in Europe to have access to verified information in their own language, with lay terms. This non-commercial tool is available for doctors of all countries to grow their patients education on lupus and hence build a stronger therapeutic alliance, minimising the time lost in fighting wrong information. <h3>Conclusion</h3> A new tool is available for doctors and patients to build lupus education. The challenges are now (a) to maximise its reach by ensuring all patients and doctors are aware of the initiative, and (b) to ensure that currency is maintained medium to long term. <h3>Reference</h3> [1]www.lupus100.org <h3>Acknowledgements:</h3> NIL. <h3>Disclosure of Interests</h3> None Declared.